The paperwork never ends The Archives
Loved Ones - June, 1999 Archive Index CHFpatients.com

Rick M's 6-1 reply to Amber's 5-30     living with a pacemaker
 
Karen P 6-1     intro, Niaspan questions
 
Chris 6-1     intro, seek severe CHF options, questions
 
Paul B 6-2     testing for CHF question
 
Dina Rice 6-2     update on John, thanks & more
 
Jon's 6-2 reply to Chris' 6-1     LVADs, options, questions
 
Jon's 6-2 reply to Paul B's 6-2     testing for CHF
 
Liz Ducker 6-3     seek UK support group
 
Robin 6-3     update on dad, upper back pain question
 
Paul B's 6-3 reply to Jon's 6-2     causes & tests, looking forward & more
 
Kathy 6-3     update on Steve, worries, denial
 
Jon's 6-3 reply to Kathy's 6-3     some questions
 
Jon 6-3     need Webtv help
 
Linda 6-4     update on 13 year old Mat, life insurance questions
 
Lucy 6-4     be sure to contact Senators if need be
 
Wanda 6-4     will drinking, smoking husband get worse?
 
Jon's 6-4 reply to Wanda's 6-4     yes, plus clarification of past response
 
Machael 6-7     seek Chicago area doctor & more
 
Wendy H 6-7     CoQ10 info
 
Annie G 6-7     seek vacation ideas
 
Carolyn B 6-7     seek allergy/cold/bronchitis info & more
 
Joy H 6-7     intro, difficult urination question
 
Marcia 6-7     dad's bypass followed by CHF - questions
 
Dotty M 6-7     husband's heart rhythm, weak arteries, questions
 
Phyllis A 6-7     to Nancy N, CHF & asthma
 
Joy H 6-8     heavy Lasix causing diarrhea question & more
 
Dave 6-8     intro & questions
 
Marty 6-8     anyone know good New York CHF doc?
 
Bill D's 6-10 reply to Dave's 6-8     CHF info, procedures, docs & more
 
Pearl 6-10     husband in hospice care, prayer request
 
Vicky L 6-10     seek life span answers, heart info & more
 
Lori 6-10     grandmother's illness, mucus, questions
 
Ann Marie 6-10     sore heels question & more
 
Carolyn B 6-12     update on my daughter & school's out!
 
Lori's 6-12 reply to Bill D's 6-10     thank you, some questions, meds
 
John Len's 6-12 reply to Ann Marie's 6-10     heel problem possibilities
 
Bill D's 6-12 reply to Lori's 6-12     meds, questions, circumstances
 
Kathy 6-15     end-stage CHF questions
 
Nikki 6-15     seek Louisiana support group, CHF questions
 
Jon's 6-15 reply to Nikki's 6-15     CHF info sources
 
Machael 6-15     prayer request, thanks & more
 
Christi 6-16     lots of Coreg problems & questions
 
Jon's 6-16 reply to Christi's 6-16     Coreg info
 
Lee R's 6-16 reply to Nikki's 6-15     depression, doctors, beta-blockers & more
 
Lori 6-16     herb use
 
Eileen 6-16     care, monitoring, severity questions about mom's CHF
 
Betty S' 6-16 reply to Nikki's 6-15     coping with CHF
 
Paul B's 6-16 reply to Kathy's 6-15     end-stages, support, coping
 
Dina Rice 6-16     update, vacation, depression, dreams
 
Jon's 6-16 reply to Dina Rice's 6-16     possibilities, diuretics & sunlight
 
Carolyn B 6-17     update on my daughter & her cough
 
Lori 6-17     seeking Zoloft drug info
 
Jon's 6-17 reply to Lori's 6-17     drug info
 
Dotty M 6-18     update on Jeff & more
 
Anna F 6-19     Dina, motion sickness questions & more
 
Lee R's 6-19 reply to Lori's 6-17     antidepressants & more
 
Jan 6-19     prognosis, questions
 
Jon's 6-19 reply to Jan's 6-19     prognosis, heart disease info
 
Sandy 6-20     dad's condition, prayer request
 
Sandy 6-21     dad's condition
 
Lori 6-21     bruising, treatment questions
 
Jon's 6-21 reply to Lori's 6-21     bruising, treatment
 
Carol 6-21     hurting joints question
 
Rick M's 6-21 reply to Sandi's 6-21     WWII vets & CHF
 
Pat ? 6-22     father in law is sick - questions
 
Carolyn B 6-24     teens, DCM & more
 
Liz C 6-24     update on my mom - good news
 
Liz E 6-24     question about my dad
 
Jon 6-24     caregivers' Url
 
Annie G 6-28     caregivers' changes due to husband's illness & more
 
Bonnie 6-29     update, husband's accident
 
Karen D's 6-29 reply to Annie G's 6-28     coping
 
Joyce 6-30     coping, waiting on SSD, support & more


Rick M's June 1 reply to Amber's May 30, 1999 - Hi Amber, I have had a dual lead, rate responsive pacemaker for almost 3 years, and I have enjoyed every beat since they put it in - on Friday the Thirteenth. It was an open day, since nobody else wanted to be operated on that day. Tell your father that it will become his special friend, something to be glad of, and not afraid of. I am now 74 years old and my friends at the fitness center tell me that my model of pacemaker is so advanced that long after I'm dead, my pacemaker will still be beating away. Isn't that a nice thought? rearadml@iu.net


Karen P, June 1, 1999 - Hello, My husband was diagnosed with CHF in 09/98, after a double bypass and mitral valve replacement. After checking his lipids, all his numbers look good except his HDL is quite low. His doctor prescribed Niaspan and he has titrated up to 1500mg each evening. Of course, he is also on all the standard CHF meds, including Coreg. My question: since going on Niaspan he has a lot of gastrointestinal distress, including nausea and diarrhea, and this morning he vomited a bit after breakfast. We do plan to call the pharmacist and also his doctor tomorrow but has anyone else had any side effects from Niaspan? Thank you. Karen. phillik@televar.com


Chris, June 1, 1999 - Hi, I'm new at this, just found your site tonight. I am very impressed with your compassion for others. My husband has had CHF for 5 years, had a 4-way bypass at that time and had an ICD implanted after cardiac arrest 15 months ago. His ICD has not gone off and his CHF has caused minimal problems but recently he has had several "clinical episodes." (doctor's words) He had to sit up at night, take extra Lasix, etc. The doctor seemed to being saying this is the beginning of the end and was not very reassuring. Hub finally agreed to ask for a handicapped sticker for our car as I am dropping him off so often. The doctor signed it for 30-60 days. This left me with the feeling that was all he would last. Everything I have read leads me to think a ventricular assist pump would add years to his life and quality too. Any info out there on trials? Who are candidates? Risks, benefits? I look forward to hearing from anyone. Chris. chrisandgene@yahoo.com


Paul B, June 2, 1999 - Hi all, I still hang out here from time to time and try to lend a helping hand when possible. Here's a lingering question: Are there any tests that could be done on a regular basis that would indicate whether someone is in the earliest stages of CHF? Perhaps a test that could do what a mammogram does for breast cancer? I would imagine the earlier the diagnosis, the earlier treatment starts, and with earlier treatment, perhaps it could be longer before symptoms worsen. I know that really doesn't help anyone already in the "leaky boat" but I'm interested. wkhj@gcnet.net


Dina Rice, June 2, 1999 - Hi, Thank you again to everyone who has written and replied to me when John's defibrillator went off 3 times in an hour. The doctor changed the setting again, to 190 bpm. I think they're getting confused by his condition. Now they say his atrium is causing a lot of the problem. He's been doing pretty well and has even tried to play golf twice. We are going to Fort Walton Beach this weekend for a week and hope everything goes ok. We don't know for sure about the Disability. We were told he was qualified in Arkansas but that it has to be approved for sure at the regional level in Dallas. I think we should know fairly soon. The lady said it was like being audited, they just have to make sure everything's legit. I hope things are going well for all of you. jmrice@ipa.net


Jon's June 2 reply to Chris' June 1, 1999 - Hi Chris, It's hard for us to comment, really. What meds is your husband on? What tests has he had? What were the results of those tests? What heart class is he currently in? Have you gotten a second opinion? LVAD is sort of like a "big gun." You want to be sure you have exhausted the less complex options first, then start looking at surgical intervention for heart failure. Fill us in and we'll try to help. Jon.


Jon's June 2 reply to Paul B's June 2, 1999 - Hi Paul, The usual tests would be required (echo, chest x-ray, stress test, etc) but these tests can only spot CHF when you are already in CHF. <G> I think the only real possibility would be to test for the underlying diseases which can cause CHF down the road. So screening would have to include tests for blood pressure and coronory artery disease, abnormal heart rhythm and more. Even if modified CAT scans or such are refined so they can spot CAD, the cost for screening a whole population for all common types of heart disease is going to be sky-high. Viral infections have usually damaged the heart muscle before they are diagnosed. Idiopathic disease is not testable since no one knows what causes it. General physical fitness and good diet are the best tools available to stop CHF. I think regular exercise is probably the number one way to prevent heart disease. Genetic testing may at some point show those most prone to heart disease but the ethical issues involved are enormous. I guess in my wordy way I am saying, no, I don't know of any test to screen for CHF. :-) Jon.


Liz Ducker, June 3, 1999 - Hi, Does anybody know of any support groups in the UK? We have the British Heart Foundation but are there any others? My father has recently been diagnosed with CHF and it would help my mother to get some local support. liz.ducker@butterworths.co.uk


Robin, June 3, 1999 - Hi, I haven't posted in a while. That should be a positive sign, right? To refresh your memory of me and my Dad, my Dad is 67. He has previously had multiple heart attacks, 6-way bypass surgery 10 years ago and was in the hospital in November of 1998, January of 1999 and March of 1999 with chronic CHF and seems to slowly be improving. Yea! He is on the same meds as most of your loved ones, including CoEnzyme Q10. Since getting out of the hospital in March, he just started to go back to work a few weeks ago. He works about an hour at a time, then has to stop because of this pain in his upper back. He is a sign artist and the slightest leaning causes this pain after about an hour. It seems to be in the area at the bottom of his lungs. I guess I think it may be fluid in his lungs. Mom says he's been drinking more since the temperature has risen. I notice he coughs a bit more although he hasn't gone back to smoking. Yea! But boy, does he want a cigarette. Tylenol doesn't help the back pain much. Has anyone else experienced this? Can anyone suggest a cure/relief? Thanks! rdulaney@comp.state.md.us


Paul B's June 3 reply to Jon's June 2, 1999 - Hi Jon, I suspected that was the answer, in that there are several ways to wind up in CHF. Given the rising cost of treating the increasing number of CHFers, I would imagine those with the most money at stake will be looking long and hard for ways to get out of it. My mother in law's CHF is tied to internal bleeding. My wife's best friend's husband got there through a viral infection. Dad retired and didn't get as much exercise as he used to, as he got up in years, so I imagine that led in part to his CHF. I wouldn't be surprised to see information coming out that when older folks slow down, they are actually in very early stages of CHF. That announcement would be followed by a new interest in senior citizen fitness programs, funded in part by insurance companies. There's probably a whole division out there trying to figure a way to prevent more younger CHFers, too. Not out of tremendous concern for everyone's well being, mind you. Here's to profit margin! :-) wkhj@gcnet.net
 
Jon's Note: Good point - I hadn't thought of it - about when seniors slow down.


Kathy, June 3, 1999 - Hi, My husband was diagnosed in June of 1997. His EF at the time was 33%. One year later, it had increased to 38%. Three months later, Steve couldn't breathe and wasn't interested in food. Another trip to the doc and he said no work for one week, and get to your cardiologist ASAP. They set up an appointment for the cardiologist at Mayo for the next morning. His EF was in the mid 20's. It was so scary. The cardiologist doubled his Cozaar and told him he needed to learn his limits at work and listen to his body. This happened at the end of March this year.
     The cardiologist is very optimistic in his attitude but everything I've read says this disease is terminal at some point. My husband seems to be in denial. He says he's out of shape - like he can work at fixing it. Well, last week Steve overdid it at work again - he's an electrician - so I had to cart him back to our regular doctor. The doc told him to take it easy all weekend, forget working with tools and think about getting another type of job. Steve is running 10 men on a school job right now and really doesn't have to work with tools. The doc also put him on Coreg. Steve's pulse rate was in the 90's and low 100's for 4 days last week. This helped. I'm worried about how long I'll have him if he doesn't accept this and take better care of himself. Neither doctor has actually come out and told him this is eventually terminal. Our boys know dad has a sick heart (they are 15 and 12) and I've explained as much as I can without telling them the ultimate outcome. I don't want them stressed out about it yet. Anyway, I'm scared, frustrated, mad at my husband, etc. You've probably all been through this.
     Help! I just don't know what to do for my family! dei@frontiernet.net


Jon's June 3 reply to Kathy's June 3, 1999 - Hi Kathy, Although the CHF road is usually terminal, the important part is making it take a long time to get there! You're right, Steve's acceptance of his current limits is an important factor. He does have to accept that he has limits, first of all. Second, he must decide where those limits are and third, start paying attention to them. These are steps only he can take. No one can do it for him. It seems that he should have figured this out for himself by now. Do you think he is completely denying to himself that he is sick at all or do you think he just doesn't understand how serious his illness can be? Does he know there are other steps he can take to improve and extend his life? Low sodium diet, strictly accurate medicine schedule and watching his weight are all important. The high pulse rate is a classic CHF symptom and isn't good. What meds is he on? Does he take them like he should? I don't suppose there is any way he would post to The Beat Goes On? Jon.


Jon, June 3, 1999 - Hi, If anyone uses Webtv, would you please take a moment to e-mail Perry at P-C-PERRY@webtv.net. He is having trouble getting to this page and I don't know anything about Webtv so I don't know how to help him. Thanks bunches! Jon.


Linda, June 4, 1999 - Hi, This is an update on my son Matt, age 13. He has been going to school at a class held at the hospital for chronically ill children. His teaher really helped us with the school. His teacher described him as a child with the same symptoms as the 'head injury' children he deals with. The school is finally listening! I will put up more on that on another day. It is late.
     My concern now is regarding life insurance. Do you have any suggestions? I have thought that if possible, I should try to get some while his physical health is stabilized. We try to be optimistic and plan for him to be all that he can be. His teacher does indicate that he is unable to be attentive for 3 minutes - maybe 5 on a good day. He has much difficulty retaining information. He enjoys reading but doesn't retain much to make much of a story over time, without help in giving him a review constantly.
     We have a Mayo appointment with Dr. Porter and hope to learn more but if anyone has any info on obstacles to, or the possibility of, obtaining any life insurance, we would appreciate it. We are looking forward to the most positive future and are concerned for assisting him in providing him with security for his family if that becomes a reality. Thanks, Linda. monserrate-ia@juno.com


Lucy, June 4, 1999 - Hi, Awhile back my husband was on dialysis and in need of a transplant. The hospital needed a determination on who our primary insurance supplier was. I called and wrote both to our insurance and to Medicare. He had been out on Disability for 3 years already. Nobody wanted to claim him as primary. I finally called my state Senator's office. I sent them the info I had on his Disability and they submitted it to Medicare. I had a determination within 2 weeks and he got his transplant in the nick of time. I hope this helps. Lucy. Lucy2u2Awebtv.net


Wanda, June 4, 1999 - Dear Jon, It has been a long time since I last wrote to you. I will try to refresh your memory. This June will be 2 years since my husband got heart failure. He was overweight and consumed a large amount of alcohol. He has always been a heavy drinker as well as a smoker. His doctor informed him that he had dilated cardiomyophy and his reading was around 20 or less. Well, he stopped drinking and smoking and lost weight. About a year later he started with cigars and said it wouldn't be a problem. He went back for his test and the doctor found he was better. His reading was now 35 and to him this was a green light to start drinking again. At first it was only a little and of course, now it is more and more. I asked last time if I should talk to his doctor and inform him of this behavior. Your reply was no because he may need a transplant one day and this could be a problem. Jon, could his heart have gotten so better that this smoking and drinking won't be a problem? He is so selfish and I feel he is only thinking of himself, not his family. He goes back to his doctor in September for his test. Do you think his heart will be worse? Suliness@aol.com


Jon's June 4 reply to Wanda's June 4, 1999 - Hi Wanda, First, please recall that I did not say you shouldn't tell his doctor! See this post (let it load) for my exact reply. I said HE would not tell his doctor if he had started drinking again and that to tell his doctor or not was your decision. Right now, I have to say that yes, his heart will get worse. Heavy drinking with a bad heart is going to make that bad heart worse. I'm sorry to be so blunt but this isn't a pill that can be sugar coated. This type behavior will hasten his death. Jon.


Machael, June 7, 1999 - Hi, My father has CHF and I was wondering if anyone could set me in the right direction to find a CHF specialist in the Chicago area? I was also wondering if there are distinct differences between CHF doctors and heart doctors? I'm just starting to look into this, so please bear with me. Thanks for your time. Machael. leinweber@hughestech.net


Wendy H, June 7, 1999 - Hi, My husband's (age 42, DCM, EF=15, ICD, workaholic) heart failure doctor at the Cleveland Clinic sent him a copy of an article from the Journal of the American College of Cardiology, Vol 33, No. 6, 1999 (May 1999:1549-52) entitled "Lack of Effect of Coenzyme Q on Left Ventricular Function in Patients With Congestive Heart Failure." This study is from The Prince Charles Hospital, Brisbane, Australia. I thought you might be interested in looking this up. I found it very interesting and the statistical analysis was well done and nicely presented so as not to boggle the mind! It describes the cellular function of Coenzyme Q as well as the set-up and results of this "placebo-controlled double-blind randomized crossover trial." In this study, they basically saw no increased effect from Coenzyme Q, even though the plasma levels were doubled for patients on the drug. I just thought you would like to pass this paper on for those deliberating over the benefit of this somewhat "expensive" supplement and as a platform for debate. Thanks for providing this forum as a form of badly needed support for those of us going through this heart failure trauma on a daily basis! wjh@ptcom.net
 
Jon's Note: This is also on Nutrient Stew. Despite statistical significance, which is a mathematical design tool, it is still a very small study. I'd like to see a large crossover trial on CoQ10 in CHFers.


Annie G, June 7, 1999 - Hi, Does anyone have some good ideas on where to travel to for a maybe 4-day or one week vacation? My husband and I were planning a Carribean vacation just before he was diagnosed with CHF. We live in Canada and have no problem with traveling to the States but I'm no longer interested in going to a really foreign country. We live closest to Detroit and could travel from there. We are obviously interested in a place where the diet is do-able and interesting activities can occur in the morning. The world stops at about 2-4 PM at our house, so no point in night life! My husband likes to golf. Me, I'll do anything if I don't have to work, take care of the kids or make salt free meals! Any good affordable ideas? I'd want to keep hotel and plane fair to about $1400US for the two of us. Thanks. Annie G, husband age 46, EF 18-26, Yep, they gave us a range! steven.harold@sympatico.ca


Carolyn B, June 7, 1999 - Hi, Does anyone have any articles or information on the effect allergies or sinus, ear, other colds, bronchitis have on dilated cardiomyopathy? I know the basic pathophysiology but I am looking for concrete information since I am dealing with the folks at my daughter's school. I feel the building is toxic to anyone who has medical problems. Any input helpful. I get a non-answer from their cardiologist, and will see an allergist next week. littleone@integrityonline.com


Joy H, June 7, 1999 - Hi, Thank you for all the wonderful information. I wish I had come here a lot sooner. I just want to be on your list and communicate with you when necessary. My husband has CHF and I'm very afraid it's getting much worse. To quote our doctor, "He's dodged the bullet much longer than expected" but I am sure there are things to do to make life easier. Have you any suggestions about what to do when urination gets very difficult? Thanks again. Joy H. huycke@home.com


Marcia, June 7, 1999 - Hi, I have a question about my father-in-law. He had a quadruple bypass 10 days ago. This morning, he was taken into the emergency room and they have admitted him with congestive heart failure. Is this a complication of the surgery? As much as we hate to think about it, should we consider the possibility that he won't survive this? I know people can live with CHF, but so soon after this major surgery, well, needless to say, we aren't holding out on hope right now. Honesty and candor will be appreciated here. mquast1104@aol.com


Dotty M, June 7, 1999 - Hi everyone, I haven't written in awhile because my husband has been doing good; Until recently, that is. He had a heart attack and 5-way bypass surgery in February of 1996. In the spring of 1998 we found out that 2 of his bypasses were totally closed and 2 other veins were 50% closed. We also found out he is in CHF and has weak arteries. He has had diabetes for 15 years. He also has a low thyroid. This April, we found out that he is starting to have kidney failure. I listen to his heart every day with a stethoscope. I noticed it was getting irregular 2 weeks ago. Then, it was very irregular all the time and his pulse was going down. I fought him to get to the hospital and they admitted him right away. They lowered his Coreg and took his Lanoxin away, then monitored him. His heart rate got down to 30. He is in no pain, only shortness of breath. They gave him a shot of Lasix but he only lost a half of pound. They did a thalium treadmill test on him and there is something there, but his regular doctor doesn't know what it is. His cardiologist has been at a seminar all week learning new procedures. We should see him this week.
     I have my husband home now. He's 55 years old and still works, but since he's been in the hospital, the doctor said no work till further notice. His heart is still irregular even with all the rest he has gotten. We are really worried and would appreciate thoughts and prayers for him. His heart rate runs in the 40s and 50s now, which is still too low. I wonder if he would be a candidate for a pacemaker? Can they use one on a person that has weak arteries? Thanks for letting me get this off my chest! Sometimes it is so hard so to be a wife and caregiver. Dotty M. mckbrown@webtv.net


Phyllis A, June 7, 1999 - Hi, I am sending this comment out to Nancy N, who has CHF and asthma. We were in touch but I misplaced her e-mail address. nancy, please e-mail me at phylcasurv@msn.com. I would love to ask you more questions about how the CHF and asthma have the same symptoms and how to tell the difference. Thanks.


Joy H, June 8, 1999 - Hi, I've already received replies and help and I thank you so much. Now I am afraid I need more help. My husband was retaining fluids very badly and so we upped (the doctor and I) his Lasix drastically. The fluids are disappearing rapidly but we have another problem - diarrhea! We have decreased the Lasix but does anyone have any suggestion on how to control the diarrhea and dietary suggestions. Thank you so much. Joy. huycke@home.com


Dave, June 8, 1999 - Hi, I am sorry if this is not the appropriate forum for these questions, but I am hoping that someone may have had the same experience, will understand and appreciate my frustration, and have some suggestions.
     I have aggressive coronary artery disease and have had 2 heart attacks in the last 5 years; one at age 35 and the other last year at age 40. The first heart attack resulted in left bundle branch block and only minimal muscle damage. An angioplasty was performed. At that time there were no other narrowed arteries noted. The most recent was in the LAD artery and resulted in damage to approximately the lower third (partially including the septum) of the left ventricle. A stent was inserted. An echocardiagram directly after and 6 months following the heart attack indicated absolutely no muscle contraction of the bottom third of the left ventricle, and "some" reduced EF. Angioplasty indicates that I have additional arteries that have been narrowed.
     My current symptoms are minimal with some shortness of breath following exertion, following eating, and during stressful moments, and having little energy following exercise. Some slight heaviness is noticeable in the chest during these same moments, but no pain. My doctor is less than forthcoming with information and answers to my questions. I think he is from the school that thinks it is better to keep detailed medical information from patients to somehow ease their minds. However, it is extremely frustrating from my end.
     I have had to resort to getting copies of my medical records and correspondence to my primary physician to obtain any detailed information about my health. Feedback from my cardiologist is usually limited to "well, everything is looking good" etc. He has put me on Zocor, a beta-blocker, ACE inhibitor, aspirin, folic acid, and various vitamins. He says "if I were you, at this point I would try anything that might have some beneficial effect." How do I find out if I am currently "in" heart failure or should expect it in the future? Thanks.


Marty, June 8, 1999 - Hi, My dad, age 83, was diagnosed with CHF two years ago. At that time, his cardiologist said that his life expectancy was 3 years. I do see my dad slowing down now. Before it's too late, I'd like to see if another cardiologist might do a better job of helping him forestall his decline. My dad and mom live in New York City (Queens, actually.) Are any of you very happy with your cardiologist in New York City or Long Island? If so, I'd much appreciate your e-mailing me. mnemko@well.com


Bill D's June 10 reply to Dave's June 8, 1999 - Hi Dave, If it walks like duck and quacks like a duck, it is a duck. You take the same medications we take. Your EF is reduced like ours. Before your angioplasties and the second one when they put the stent in, they took pictures of your heart called angiograms. They probably gave you a diagram and circled where they did the repairs. Look on the latest diagram and see if you can find "LVEF" or "EF" and a number. That is what they measured your ejection fraction, normal is 55 to 65. If you are only reading the messages posted on the forums, you are missing the best part of Jon's Site! At the top of each Forum page, click on the words "Site Index." Start by reading "The Manual." Jon has over 200 pages of information on Congestive Heart Failure that you should know! The more you know, the longer you can live with CHF. Dave? How about including your e-mail address. You'll get more answers! You might want to consider finding a better cardiologist. Bill D. billdog@gate.net


Pearl, June 10, 1999 - Hi Jon, Since I posted the last time my husband Joe was in the hospital. He is now under the care of hospice; what a wonderful organization. They were so efficient getting things started. The same day he was discharged, a nurse came to our home. They will have an aide come in 5 days a week to bathe him or do anything else we might need. They will bring in a hospital bed, walker or any other equipment that we need for his care. I do not feel so alone now. A nurse will come in twice a week or anytime that we need one. Since he knew that they were going to help in his care, he has been more determined than ever to survive. Neither he nor I have ever given up hope that he will get better. We need all the prayers that we can get. God bless you all. pjstrange123@yahoo.com


Vicky L, June 10, 1999 - Hi everyone, Well, the last week has been pretty rough. My mom went to the hospital for chest pain. She didn't have a heart attack but the results of her test weren't good. She has two blocked arteries - 75% and other 85%, and also has a myopathy of the heart muscle. If anyone could help me out in understanding the results of a myopathy and the risks and how long someone usually lasts with it, that would be great. I really can't get a straightforward answer from the doctors and I just want the truth with no beating around the bush, so I know what to expect. Thanks in advance. spldbrtbch@aol.com


Lori, June 10, 1999 - Hi, My 91 year old Grandma has been diagnosed with COPD, bronchitis, and Congestive Heart Failure. She has lost her appetite, won't eat, and said her stomach is upset. She has been a good eater until about 3 weeks ago. She is very weak and shakes all over after physical exertion, such as going to the bathroom. She had a discharge of jelly like substance from her bowel. Tonight she had a peppermint and then vomited up a large amount of mucus. I believe the jelly like substance discharge was mucus she has been swallowing. This must be causing her to lose her appetite. She is not seeing a specialist, just a family doctor. Any advice out there? ericlori@netins.net


Ann Marie, June 10, 1999 - Hi, My Mom is 85 and has had CHF for a few years. She has had diabetes for many years and now is in the beginning stages of renal failure. I am wondering if there are any support groups in the area - we live near Los Angeles? With all these problems, my Mom is still alert and still doing things around the house. One of the things that is most bothering her now is sore heels. Has anyone had this and is there anything that helps? Metaphlady@aol.com


Carolyn B, June 12, 1999 - Hi, An update on my daughter, who is almost 13 with DCM. We are still trying to get to the bottom of her cough. She saw the allergy doc today, her lungs were clear, her pulmonary test was great, they did a lot of blood work for allergies. School is out, so she is away from the moldy oldy building. If tests come up negative, we will switch ACE inhibitors. We will know in a week! Plant flowers! Enjoy the sunshine! School's out! Yeah! littleone@integrityonline.com


Lori's June 12 reply to Bill D's June 10, 1999 - Hi Bill, Thank you for the advice. They have my Grandma on 50mg Zoloft twice a day now. She just started it a week ago. Do you think that is what is causing her to be sick to her stomach? She thought she had to vomit all day yesterday. They say the reason she won't eat is because she is depressed about being in the nursing home since February. I say that is not it. Her other meds include: 20meq K-dur, 80mg Lasix, 500mg Levaquin, 300mg Theodure, 81mg aspirin, 15mg Restoril, 325mg Tly and Phen c Cod (cough med). She has always been constipated so she takes milk of magnesia also. Do you think I need to take her to an emergency room? I would want to go to the city then, we are a small town, with no specialists here. ericlori@netins.net


John Len's June 12 reply to Ann Marie's June 10, 1999 - Hi Ann Marie, Diabetes and old age can take most of the fat cushion out of the heel. Heel pads could help. Also the cause could be heel spurs. Check with a foot doctor. John. a_lenny6@hotmail.com


Bill D's June 12 reply to Lori's June 12, 1999 - Hi Lori, When I sent you that e-mail, I wasn't aware that your grandma was in a home. I also didn't know that you don't have any specialists available. Zoloft is to fight depression. It takes upwards of 6 weeks to work. Levaquin is to fight bacterial infections like bronchitis, pneumonia and sometimes urinary infections. From the sound of it, she already has pneumonia. Theodur is to decrease the "symptoms" of asthmatic bronchitis and emphasema. Tly and Phen c Cod is, I think, a mixture of Tylenol, Phenaphen and Codene. It's for pain. Do you remember I asked you what your grandma wants? Does she want cardiologists and pulmonary doctors running tests and doing procedures so that she can live a little longer or does she just want to be comfortable while she waits to die? Has she discussed this with you or your parents? Does her doctor know her wishes? She seems to be on reasonable medicines and hopefully the Zoloft will kick in soon. Bill D. billdog@gate.net


Kathy, June 15, 1999 - Hi, My father in law, I think, is at the end stages of CHF. He is on oxygen 24 hours a day and still gets out of breath. He is depressed, and who wouldn't be, tired and has very little appetite. My question is, how long can people in this condition, who are old, go on? Also (I know this seems morbid), but usually does a person make it to a hospital? I worry for my mother in law and how she can handle something sudden. Thanks to anyone who can answer my questions and good luck to all of you. justgazin@access1.net


Nikki, June 15, 1999 - Hi, My mother has recently been diagnosed with CHF. She is not taking this well and is having complications with her fluids and gaining weight from it. She feels trapped in her bedroom because she is constantly running to the bathroom, because of the amount of fluid pills they give her. Is there a support group in her area in Jefferson Parish, Louisiana, so she can know there are others that have this as well? Does anyone have any ideas? My mother does not have access to the computer and has recently been talking about taking her life. My mother is not even 50 years old and I feel completely helpless. Thank you for your time. Nikki. tsalagi@ehmail.com


Jon's June 15 reply to Nikki's June 15, 1999 - Hi Nikki, The first best thing you can do for your mom is to print out The Manual and give it to her. Be sure she reads it. A low sodium diet can really reduce her fluid buildup, dose of water pills, and trips to the bathroom - drastically so, in fact. Then she would be up to getting some exercise, which is the next best thing she can do, after starting a low sodium diet. The main thing she needs is to become knowledgable about her illness so she can be an active participant in controlling it and getting on with her life. Be sure to click on the link at the top of this page, which says Site Index. There is lots to learn, and you can print out whatever you see that she needs and give it to her to read. Jon.


Machael, June 15, 1999 - Hi, I have just recently started visiting your site and was very surprised at all the caring and help everyone has given me. My father has CHF along with many other things. I finally called his doctor yesterday before he went to see her, to ask how he was doing. We weren't sure he was telling us everything. She informed me that he hasn't been telling her all his aches, pains or his problems. After I talked with her, she said my information helped a lot and would lead her in a better direction. She decided to admit him into the hospital for tests and to see a pulmonary doctor and cardiologist. I know this is what is best and thanks to all the information I have found at your site (along with the people) has to help me better understand. I noticed that some people have asked for others to be put on your prayer list. I would greatly appreciate if anyone would pray for my Dad. I'm very scared and am unsure of his condition. Thanks for all you have done and the time given to me. Machael. leinweber@hughestech.net


Christi, June 16, 1999 - Hi, My mother is 73 years old and only has the use of one kidney and the working one has a ureteral stent in place for a few months. She had the upper portion of a lung removed due to cancer 8 months ago. She has also had vascular disease for the past 20 years or so. A couple of months after the surgery, she began complaining of severe fatigue and shortness of breath. After telling her pulmonologist about it during several visits and being told to push herself harder to overcome it, she finally went back to her internist, who ordered an echocardiogram and blood tests. She was sent to a cardiologist who gave her the diagnosis of CHF and that's about all he told her other than what meds he was putting her on. I do not know her numbers right now. I have been trusting the doctor too much, I think. Her meds are Lasix, Digoxin and Coreg. The doctor said the Coreg would make her feel like "dog meat" for awhile but would eventually make her feel better. She is still on the lowest dose. He didn't say for how long she would feel bad or that the dose would be doubled several times before she would be on the maximum dosage.
     Since that time, she has felt progressively worse every day from even worse fatigue. When she was diagnosed, she walked on the treadmill 10-15 minutes every day. Since shortly after diagnosis, she has been unable to do any exercise. Getting out of bed and going to the bathroom tires her out so much she has to return to bed for awhile. Getting up to eat breakfast does the same thing and she is in bed most of the day. At first the dizziness kept her in bed but that has passed and now it is the fatigue. This has gone way beyond "dog meat" and is making her want to die. She has also developed an itchy rash and back pain. We told the doctor about the fatigue but he said that she needed to stay on it for several more weeks. We are changing cardiologists but until he tells us something, I am wondering if all of this is a common experience. Some of the posts I read sound more encouraging that this.
     Does it seem like a change in medication will make a difference or is this what happens at the end? Thanks very much for the chance to say all this and I would really like to hear from anyone who has been through this. cantam1@aol.com


Jon's June 16 reply to Christi's June 16, 1999 - Hi Christi, Welcome to Jon's Place. I hope you get some replies from those who have been through a similar experience. I suffered nothing more than some mild lightheadedness when starting Coreg. Please be aware that not everyone can tolerate Coreg. It can cause depression and worsened lung function in some people. There is more information here, here. Please keep us updated! Jon.


Lee R's June 16 reply to Nikki's June 15, 1999 - Dear Nikki, Your mother sounds depressed, and understandably so, with what she is going through. Is the doctor aware of her depression? She sounds like she is reaching out for help and I question if her physician is providing it. In the beginning it is sometimes difficult to find exactly the right amount of meds and even the right meds. With me, there was trial and error until we found a good regimen. I am 60 years old and was diagnosed in 1997. When I began beta-blockers, I was very depressed, so we tried about 3 or 4 others. I just can't take them because they depress me so much, but that is an individual thing. However, I do take ACE inhibitors. Please tell your mother to try and be patient while they try to adjust her medicine. Feel free to e-mail me or any of the others here at Jon's Place. This is a wonderful support group. Learn all you can, Nikki. There's a lot on the site here and it will help. Your Mom is in my prayers. Lee. LeeRoush@aol.com


Lori, June 16, 1999 - Hi, I don't know if anyone would want to try these herbs since someone said doctors don't know their side effects mixed with other drugs, but here are a couple that might help some of you. I have been reading the posts and read that some of you have trouble sleeping. My husband and I both take Valerian to help get a restful nights sleep. You wake up more refreshed, like you actually got some sleep. Another one for depression is St. John's Wort. It really picks you up so that you can accomplish more during the day. It has worked for me. I do not have CHF so am not sure if it will help. ericlori@netins.net


Eileen, June 16, 1999 - Hi, I'm new. I just found your site and I am grateful you are here. My mom is 78, diabetic for about 10 years, an ex-smoker, about 15 pounds overweight, not a drinker. My dad died about 9 months ago. Mom gained 15 pounds in 2 weeks, which prompted her doc to put her in the hospital for 3 weeks, adjusting various meds which now include Coumadin. I live in DC and Mom lives in Oklahoma. When they sent her home from the hospital, it was with an oxygen tank. She uses it 24/7. I'm going to "visit" for 2 weeks to try and help her develop a new schedule, work on a low-sodium diet and plug into available social services.
     I'm terrified. Does this sound like end-stage to you? What can I do during my visit to be of help to her and does anyone have ideas about how to monitor her condition and assist her from half a continent away? I am truly relieved to find a space to ask these questions. Eileen. jconway@erols.com


Betty S' June 16 reply to Nikki's June 15, 1999 - Hi Nikki, Share this site with your mom if possible. Computers are cheaper then ever before. I was diagnosed with cardiomyopathy (the doctors did not say anything about CHF) two years ago and I am 45! Up until I found this site, I did not understand what I was up against. I have learned a great deal from the people who visit this site and am much more educated then I was a few months ago. I still have 3 kids to raise at home and my quality of life has improved a lot since I dropped the salt and sodium - advice I got from people on this site - not my doctors, and I am walking 30 minutes a day! To be educated about this disease is to be armed for the battle ahead for quality of life! Tell your mom to keep the faith! eswerda@ucsd.edu


Paul B's June 16 reply to Kathy's June 15, 1999 - Hi Kathy, There is no real way to determine what the end of a CHFer's struggle will entail or when it will occur. Usually the end is comprised of the body filling up with fluids or the heart just stopping. Sometimes the CHFer dies in the hospital, sometimes in a nursing home, sometimes at home. I guess what I'm trying to say is that death could come at any time. My father passed away a few weeks after losing his appetite and his ability and desire to exercise, but I've heard of folks who re-established some vitality and others that lingered for several months in poor condition. Be tender, but up front, with your mother. My guess is that she sees your father failing and when death does come, it won't come as a shock. Good luck and my prayers are with you and your family. wkhj@gcnet.net


Dina Rice, June 16, 1999 - Hi, We had some good news. John was approved for Disability on the first try. We are so relieved not to have to get a lawyer and fight it out. We should get the first check the last week of July. The financial strains of this are hardly ever mentioned here, but I know we are all going through it. We took our trip to Florida and it was really a good family time. John went deep-sea fishing and swam a lot and rested and we ate some great food. John probably didn't do a wonderful job of watching his sodium intake because he gained 8 pounds. I gained 4 and even our 4 year old gained 2! He has been having some horrible dreams lately about watching his own funeral and actually hearing the music played and seeing people's faces. Do you think this is caused by Prozac? He has said that he feels like he is getting weaker and has been contacting everyone in his life that he's lost touch with. He says he wants to make sure he talks with everyone before he dies. Do you think he feels something and knows he may be nearing the end? Do any of you have experience with your loved one doing this? It reminds me of the "nesting" a pregnant woman does before her baby is born. It just seems to be not a good sign; he keeps saying he feels "different" now. He has slept all day and I can't get him to get up. Well, keep out of the heat and have a good weekend. PS. Has anyone heard from Robin in the hospital lately? jmrice@ipa.net


Jon's June 16 reply to Dina Rice's June 16, 1999 - Hi Dina, I hesitate to bring this up simply because I'm too tired to go into it at length, but are you sure he has accepted his CHF, so he can begin genuinely coping with it? Combine too much sodium with over-exertion and the resulting fatigue hangover, and add a touch of denial and depression, and you have a pretty miserable individual. I'm not familar with Prozac side effects and I don't really know John's situation so this is just a guess. Off the topic, people on Lasix are generally supposed to avoid much sunlight, so watch out for those out-of-doors excursions. Jon.


Carolyn B, June 17, 1999 - Greetings! My prayers are with you all who are dealing with taking care of a parent or loved one. My kids are almost 13 and 15, and have DCM. Another update on the younger: She has been put on a nasal spray for allergies, chronic cough (from oldy moldy school building) and just yesterday her sinus x-ray showed major infection, so she is on Augmentin for 3 weeks. I am glad we know the source of the cough - allergies vs CHF vs ACE inhibitors. I still watch her closely, because things can change rapidly. littleone@integrityonline.com


Lori, June 17, 1999 - Hi, How do I find out more info on Zoloft? It's an antidepressent. It has really got my 91 year old Grandma down. Her stomach is so upset she says she can't eat. I have been giving the nurse at the home a chance to see if she's right about this drug helping Gram but I'm afraid it's making her worse. Her hands shake so bad she can't even take a drink of water. Does this drug lift you up or mellow you out? I really didn't think she even needed it but this nurse thinks she does. Is there a site where I can look up drugs and the side effects, ect? Thanks. Gram has been on it for 2 weeks now. ericlori@netins.net


Jon's June 17 reply to Lori's June 17, 1999 - Hi Lori, See my Site Index through the link at the top of this page for all the CHF info contained on this site. My Links page has many sources of drug info. Let us know if you can't find what you seek. Maybe someone who is taking Zoloft will write with their experience also. Jon.


Dotty M, June 18, 1999 - Hi, Hello Everyone, First of all I want to thank everyone who remembered my husband Jeff when he went to the hospital to see the doctor. You really can feel the prayers and concerns from people, and I will never forget this experience. The doctor ended up doing a angiogram on him and his heart is a mess. The doctor did 4 angioplasties on his right coronary artery. The left side of his heart had a ton of blockages and he didn't touch those. His EF was 47% and has dropped to 25%. The blockages have caused his heart to go into an irreguar rhythm and his pulse runs in the 50s. His heart is stiffening from diabetes. They may have to put a pacemaker in if it doesn't speed up some. His kidney failure has gotten somewhat worse but they are watching that also. His CHF is stable and they were happy with that. The doctor said he may have to go on Disability if his EF goes down much more. He has a lot of shortness of breath and some dizzy spells. He has been more fatigued and weak lately. The news wasn't that good but the doctor told Jeff that he is going to try to keep him going as long as he can. Thanks again for all the support and the encouragement from such a great Web site! Dotty M. mckbrown@webtv.net


Anna F, June 19, 1999 - Hi all, We just got back from a wonderful vacation in Williamsburg and Bush Gardens. We really had a great time. Edward got tired but so did I. Dina, I'm glad to hear about the Disability but sorry to hear about the depression. I can tell you that when I was on Prozac, I did have more vivid dreams and more nightmares. I asked Edward, who is on a pretty high dose of Prozac, and he also feels that he has dreams that just come out of the blue, and is dreaming more than before his Prozac.
     Let me put a question. Has anyone had problems with motion sickness? Edward and I used to love to take a ride on a sunny afternoon and he used to take a drive when he needed to think about things, but since his CHF, he gets really car sick. I do not feel comfortable driving much anymore, so I drive and he will almost always get sick. Both to and from Williamsburg he did and it seems to be getting worse. Is it a side effect of one of the meds? Does anyone know or have the same problem? Please let me know. Thanks and God bless to all. Anna. edward.ferguson@cwix.com


Lee R's June 19 reply to Lori's June 17, 1999 - Hi Lori, I do not take Zoloft but I do take Prozac. They are both anti-depressants in the SSRI class (selective serotonin reuptake inhibitors) and they should be given with food. I had a problem in the beginning too and had to take Zantac for my stomach pain. I'm not a nurse or a doctor but I question giving these SSRIs to older patients. First of all, they can cause a weight loss, although this might not be a problem. It can also cause sleeping disturbances and therefore you have to take it in the morning. Does your Mom seem depressed to you? Is she sad or was she having trouble sleeping? I would definitely get in touch with the doctor prescribing. One more thought would be to go to your local pharmacy and they will let you look up Zoloft in the PDR (Physicians' Desk Reference) or give you a package insert from a bottle if you cannot find enough info on the Web. These drugs do not "mellow" you out, they actually give you more energy and a more optimistic outlook on life. In short I would say they jazz you up a little bit and take away that "wanting to die" attitude. I hope this helps you and your Gram. Take care. LeeRoush@aol.com


Jan, June 19, 1999 - Hi, This is my first time here. My 81 year old mother has had heart problems for years. She had a valve replaced in the early 1980s, and was put on a pacemaker about 5 years ago and did fairly well. She recently began having severe shortness of breath with small amounts of activity. She also wakes up during the night with shortness of breath for no reason, has lost weight and has no appetite. They did a stress test a couple of weeks ago and she just got the results. Her doctor says her heart is functioning at 15-17%. He told her she should notify her family about her conditions. I guess what I want to know is whether this is end-stage heart disease, and what this means in terms of how much longer she has to live. I know that this is not really predictable but I am at a loss here. Any help would be appreciated. jmac@bv.net


Jon's June 19 reply to Jan's June 19, 1999 - I'm not a doctor and don't know any specifics about your mom's health so please forgive me for speaking in broad terms. It's true that prognosis is pretty much impossible. I do believe that older CHFers are often not given aggressive enough treatment, and a study supports that view. Not only does aggressive treatment - ACE inhibitors, digoxin, diuretics (and potassium) and possibly beta-blockers - increase life span but it also reduces symptoms, improving quality of life. So, even if life span were not increased or such drugs are not given for that reason, such treatment is highly desirable for older patients like your mom. It makes them feel better. Because of doctor-patient confidentiality, sometimes it is hard to get info from a doctor about a parent, and rightly so. Still, be sure your mom is educated about her disease if at all possible. She can certainly invite you to go with her to the doctor and ask questions and get information for her so she gets the best possible care. Start with The Manual and then keep on reading, and keep on asking. You can always print stuff out for her and then read it to her, encouraging her to ask questions along the way. :-) Jon.


Sandy, June 20, 1999 - Hi, I'm new to this part of the site. I have been reading the other side for CHFers for a while. My Dad is 74 years old and has advanced CHF, possibly what would be termed end-stage. He has been ill since January and much worse since April, with several hospitalizations. He is on continuous dobutamine drip, with possibly a little improvement. He does have more stamina lately. The biggest problem is he also has arrhythmia for which he takes amiodarone. This causes severe nausea and loss of appetite. They have cut the dosage down so he can eat but this is a worry to have a lower dose. He is at home now but we worry that insurance will continue to cover at home nursing care. My daughter is getting married next month and we so hope he can attend the wedding. Things are looking better but we need your prayers. Thanks for listening. Sandi. tm91325@navix.net


Sandy, June 21, 1999 - Hi, My dad has advanced CHF. We have been on a downward hill since April. He was a World War II vet serving in south Pacific. I have heard through the grapevine that there are an abnormal amount of these vets with heart failure. Does anyone know anything about this? It won't change anything but I am curious. tm91325@navix.net


Lori, June 21, 1999 - Hi, My 91 year old grandmother has been taken off Zoloft after a visit to the doctor on Thursday. We told him it wasn't doing her any good. He gave her some pill to help her nauseated stomach. If it doesn't get better in 2 weeks, he said he should give her some dye and go in to look at her stomach to see what's going on. He also recommended physical therapy to start this week. She has gotten so weak it's a struggle to get to the bed. Is this a good idea, this therapy? She also has large purple bruises all over her legs and arms. Is this caused by dehydration, medication, or what? The doctor said older people just get those. She never had them before all this medication was given to her. One of the bruises looks as if it is turning into a sore. The doctor is not a specialist, he's our home town doctor. We still have our appointment with an internist but I don't know if she'll be able to stand the trip. Her attitude seems better since she was taken off Zoloft. She is at least visiting now. While on Zoloft, she just sat staring off not really listening to anyone, and she felt very ill. ericlori@netins.net


Jon's June 21 reply to Lori's June 21, 1999 - Hi Lori, Is your grandmother on Coumadin (warfarin)? It's a blood thinner and too high a dose can cause bleeding and bruising. Coumadin should be carefully monitored and adjusted to prevent serious complications. I question any doctor who replies that old people just get this or that. It's a total non-answer and may indicate that the doctor isn't paying close enough attention to the patient's actual symptoms but is just "seeing patients." I would personally recommmend your grandmother see a specialist, preferably a cardiologist specializing in heart failure, as soon as possible. In the meantime, I would question her current doctor about the bruising and insist on a real answer instead of a brush-off. Do some reading on Coumadin first and call your local pharmacist and ask him about it as well. Jon.


Carol, June 21, 1999 - Hi, My mother is 68 years old. She has CHF. She went into cardiac arrest in October of 1998. Her EF the last time it was checked was 25%. She has been doing pretty good but she has started complaining of her knees and elbows hurting. Does anyone know if this could be caused from the CHF itself or maybe the medication? Her weight has been up a little. It might be up a pound or two one day and then down the next. Her blood pressure and heart rate stay about the same. I would appreciate any information anyone has on this. kencoc@sheltonbbs.com


Rick M's June 21 reply to Sandi's June 21, 1999 - Hi, I am a regular at Jon's Place, on the " other side" having found my way here about 2 years ago (see my bio in Who's Who). I am also a 74 year old Navy veteran, who spent 2 years in the South Pacific on an LST. Whatever it did to us, I don't think being there then had anything to do with having CHF today. WWII vets are dying at the rate of 1000 per day but I think that comes with the territory. We're all pretty old, but we sure were healthy and active when we were 18 years old and spoiling for a fight. Just be happy to have had the old man around this long. Lots of guys didn't get a chance to grow up, back then. Be thankful for the time you have, now. Good luck. rearadml@iu.net


Pat ?, June 22, 1999 - Hi, My father in law has emphysema and CHF - I think. Yesterday I took him to the doctor, who took chest x-rays and said my father in law was not "in congestive heart failure." He went because of severe fatigue, extreme shortness of breath ("I let my wife do the talking because I don't have enough air") and no appetite. He has a pacemaker. There is still an arrhythmia we cannot get corrected although he has been shocked 3 times. Three doctors told him to go home and settle up his affairs. We have now found one who talks to us and has compassion but I just don't understand where we are. I have never been quoted an EF. I take him to the doctor most times and tend to his medications, etc. My husband helps but depends on me too, so I am just trying to do what is best for him. He did go through a stage of depression but I think we are out of severe depression now, although I would be depressed too if it was so hard to breathe. I lost my mother 2 weeks ago and sure don't want to go through that again anytime soon. I would appreciate any advice that might help him. We see an internist, cardiologist and pulmonary specialist. pbarrow@hot1.net


Carolyn B, June 24, 1999 - Greetings, My youngest is celebrating her 13th birthday! (5 years with DCM) Does anyone know why they call it a "slumber" party when they never sleep? littleone@integrityonline.com


Liz C, June 24, 1999 - Hi, I have posted before about my 85 year old Mom who has CHF. Last time I told you the doctor had recommended hospice and I was really freaked out because I didn't think she was that bad yet. Well, on Tuesday I took her back to the doctor for her regularly scheduled visit and he couldn't believe how well she is doing! He shook his head in amazement. She is is holding her own and is still active and making plans for the future. It just shows that doctors don't always have all the answers. I take each day as a gift and never give up hope. I know that my Mom's attitude, sense of humor and all the prayers being said for her have helped. She has been taking CoQ10 for about a month, too; 30mg twice a day. Do you think it would hurt to increase the dose? To those of you who have written personally and all who have kept Mom in your thoughts and prayers, I thank you. Liz. Ecolaneri@aol.com


Liz E, June 24, 1999 - Hi, My dad has been dealing with coronary artery disease for 15 years now. He suffers from CHF. His doctor keeps on telling him to do whatever he wants to do, eat whatever he wants to eat. He does tell him to watch fluid and salt intake. However, lately his breathing has become worse and he has drainage from his nose. It's clear, but it just flows out. He doesn't even realize it until it hits his lips. Has anyone complained of this symptom before? I think this Web site is great with a lot of very good information. Thank you. rehara@home.com


Jon, June 24, 1999 - Hi, My brain cell is tired today but I want to pass on an Url anyway. It may be of use or it may not. It's for caregivers with loved ones who have chronic illness. www.intelihealth.com/IH/ihtIH?t=9030&r=EMIHC000. Jon.


Annie G, June 28, 1999 - Hi, My husband is going for a stress and echo on Tuesday. I know he's putting a lot of expectation into seeing an improved EF. He was diagnosed in November of 1998 with cardiomyopathy, possibly viral, possibly idiopathic. His EF then was 18-25. His sleeping patterns are still so strange, though. He worked 25 years on 12 hour rotating shifts so maybe it'll take a while longer for him to have sort of regular hours. He sleeps now from about 8:30 or 9pm until about 4 or 4:30. He's up from then till about 2pm and then stretches out on the bed and watches TV, gets up and has dinner with the family, then lays back down till he falls asleep, probably half the time using a sleeping pill.
     We can't really have any decision making conversations when I get home from work at 5:30pm because he's too tired and sometimes a little "goofy" by then. I know I sound like I'm whining and I guess I am. He sometimes doesn't realise that my life changed pretty significantly when he got sick, too. No social life, no going out to a show or dinner even once a month, just work and home. I'm going to try to go out once a month or so with old friends just to try and feel normal but they go out so late it's hard. I just can't seem to stay out much past 9pm without feeling absolutely drained. Oh well, I ramble on. I'll let you know how he makes out with his EF. He's on the usual meds. They're going up very slowly on his Coreg. He's only up to 12.5mg twice a day and it's only being increased by 3.25mg once a day every 3 weeks. The docs absolutely don't want him upping it any quicker. I'll keep reading and write in later, Annie G. steven.harold@sympatico.ca


Bonnie, June 29, 1999 - Hi I thought I would write a brief note to let everyone know where I've been the past few months. My little one who has DCM is still stable, thank goodness but in March, her father had a terrible accident at our house. He was working on his drag car when it took off and ran into our house. He was in ICU for 2 months on life support and is now home recovering from a severe brain injury and has lost almost all of his vision. We are now fighting the government for his disability. They keep sending him to doctors to prove that he cannot see. I thought when Kaitlin got sick that I would not be able to handle it, but God showed me a way. Well, again He has given me courage to go on. So for all of you out there who are depressed and scared about your condition, cling to God's hand. He will never let you down. For all you non-believers, I'll pray for you. Bonnie. ersie@blomand.net


Karen D's June 29 reply to Annie G's June 28, 1999 - Hi Annie, I think all of us whose husbands or wives have CHF have had drastic life changes, and you're certainly not the only caregiver to be stressed out by all of the added responsibility (as my husband can testify!). I also feel at times as if all I do is go to work, come home to work some more at home and then fall into bed exhausted, only to get up and start it all over again. While Bill does have problems sleeping, they aren't as severe as your husband's and so most nights we can talk and we do get out about once a week for dinner, usually to a restaurant that has a good salad bar. On weekends we try to rent a video, have a quick visit with friends or if he's feeling pretty good, we'll go to a movie. It's really important for you to stay in touch with your friends and to plan time just for you, if your husband's health allows it. I hope your husband's echo and stress test show an improvement.
     Bill was diagnosed in September of 1998 and his CHF seems to have been caused by an upper respiratory infection he had last summer. His EF at diagnosis was 12-15%. He's up to 50mg Coreg a day but hasn't been re-tested so we don't know if his EF has improved. He is having some shortness of breath again and will have another VO2Max test in 2 weeks. The last time he was tested, it was at 17.3, which we were told was high enough to hold off being transplanted. Please stay in touch, either through this board or you can e-mail me whenever you want to talk. Let us know how things are going for both you and your husband. Karen. deitemey@kua.net


Joyce, June 30, 1999 - Hi, My husband has CHF and AF. We're not sure how he got it because it seems to be very hard to get doctors to tell you anything. We have done a lot of reading and really learned a lot. I am not sure who this is harder on, me or him. I have to work and still try to keep him going. His spirit gets so low at times and we are sinking so fast. We have been waiting on SS for at least 7 months. I know everyone out there has faced this same issue at some point in time. I am so glad that we found this site because it gives each of us the support we need to get through this illness. My heart prayers go out to each and every one of you. No one can know how hard it is until they go through it themselves. jas48@webtv.net


All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.

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